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GeorgeNW

Got Diagnosed. Progression in 5 months and when to start meds

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Yesterday had second opinion with same verdict -Parkinson. I am 38 years old father of 4 kids and none working wife. Last 2 months spent with anxiety regarding finances and overall depression. But kids are charging my batteries and keep me going. Gone from occasional right hand tremors when stressed and right shoulder stifness (few months ago) to daily tremors during morning and day, dystonia in right leg and arm. Not taking any meds yet and wonder what was your timelines when you said that it no more manageable and time to start pills. Originally i was thinking delaying meds as long as i can to perform my office work duties.I informed my boss and HR so i can concentrate on work and not overthink hiding symptoms.  What is your Parkinson progression timeline noticing- > diagnosis - > meds? Do you regret delaying taking meds or starting them earlier?

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Hi George,

I'm 49, three kids, and diagnosed in April.  I've avoided meds too but am thinking about starting them - the rigidity in my neck is so annoying. I first noticed symptoms years ago - slight tremor, arm not swinging as much but symptoms intensified in the last year.  Finally consulted Neurologist in April and was delivered the news.   Anyway I'm not much help but know that you are not alone.  

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George my husband found out he had Parkinson's at age 45, that was 25 years ago. He started taking Sinemet right away and for him it made a great improvement in his life. He knew something was wrong for a couple of years before but because he did not have a tremor he was not diagnosed right away. He still takes a combination of regular Sinemet and Sinemet ER. Lots of complications now but that is to be expected after all these years. Good luck and God bless

 

 

 

 

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George,

Whether you take or delay meds is sometimes a hot topic depending on your opinion. One thing I have personally noted from my own experience is if you're focusing on the disease, your symptoms are gonna be magnified quite a bit. First, you need to find things that will distract you from having PD. It's not going anywhere, so fretting about it is wasted energy.

Excercise everyday!!!!

If you still feel that your quality of life needs something extra, then by all means discuss with your doctor on what they think would be best for you. You could try starting with Azilect to see if it might help (pretty rare if it does, but still worth the attempt). Be careful with the agonists as they can cause some serious unwanted issues. Not everyone experIences these problems, so if you go that route have your family keeps tabs on you. If all else fails, you can go for the gold standard of Carbidopa/Levadopa in the form of Sinemet or the new formulary which is Rytary. 

If you decide to go the meds route, it might take some time to find the right combination/dose that will improve your quality of life. I take Azilect and Rytary. It took nearly two years to find the dose and timing that provides the best relief for me. Patience is the key when it comes to Parkinson's. It progresses slow, so time is on your side.

Regards.

Dave

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First take a breath....

Get a good MDS doctor

Everyone is different-there are different options. That's why a good movement disorder specialist (MDS) is important. 

Start exercising if you don't already...there's lots of choices for PD specific programs. Exercise is one of your best tools to fight PD! I do a program called PWR (www.pwr4life.org) & my husband and I take dance lessons. Find something you enjoy doing. 

Take one day at a time...you will find what works for you. Welcome to the forum!

LAD

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Much of your story sounds familiar.  I was also diagnosed at 38 with 4 kids and wife that's a SAHM.  Also noticed a fair bit of progression early on.  The similarities though stop about there.  As you will hear often around here everybody experiences PD somewhat differently.  

 

Had you come here before informing your employer most would have advised against that move.  What's done is past, but depending on who you work for that could turn out to be a neutral move, or a poor choice.  Rarely is it a positive outcome when first diagnosed.  Eventually you are forced into disclosing, but putting that off can have advantages.  After 2 years I have still not told my workplace, and don't intend to change that for many more years if I can help it.  

 

Anyway, regarding meds, I started on Sinemet right away.  I felt like I had 5 years previously.  Tremors went away, anxiety (which was really only a few discrete events) went mostly away, and that feeling like I just wasn't quite all right (which had been there for several years before tremors started) went away.  Only side effects I've had were some easily mitigated nausea when I'd take the meds (eating a cookie was plenty) and after a year or so an increase in daytime sleepiness.  Both of those issues went away when I switched to Rytary which is an extended release version of Sinemet.  So, I have zero regrets with starting the meds right away.  But that is an intensely personal decision that nobody else can make for you.  There are others on this board that do regret starting meds right away, or who delayed meds for years and are thrilled with that decision, and there are others that regret delaying meds.

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Thanks everyone for sharing their experiences.

It is always helps to know that you are not along and have a perspective of those who went through similar stages of their life. Time to establish regular exercise schedule and stick to it. 
I played  ice hockey once a week for past 4 years, but it is time to select something with less probability of injuries and i became less useful on ice for my team. Started attending box classes once a week and doing 3 miles runs 3 times a week.

@Stump, maybe we will do fishing some day -  i guess we are close by :rolleyes:

Does anyone experienced mass loss with PD, i used to be 165 lb in Feb 2017 with my 5'9 height. Now it seems most of my fat is gone and my weight stabilized around 150 lbs since July.

 

 

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Yeah, I'm 6' and about 156 lbs, and have been for the lat 10 years or so. Eat like crazy but can't gain weight

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Dear George,

I have similar story, I am 41 and diagnosed 2 years back. I suggest you to start taking medicines and do Yoga everyday. I suggest you to do following:

1. Hatha Yoga(Physical exercises)

2. Pranayam(Breathing exercises)

3. Yoga Nidra(relaxation without sleep)

 

God bless,

Sunil

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Diagnosed 2.5 years ago at 45. My finger tremor had progressed to my entire hand in the two months before I was diagnosed. Never stopped taking Sinemet after my Sinemet trial for diagnosis. I have had to increase my meds to 6 - 25/100's per day. Never really tried to keep my diagnosis a secret or had any regrets starting meds. I really can't concentrate on my work when the tremors and stiffness kick in.

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